August, 2002

Dear Friends,

In the year since our last newsletter, the world has been rocked by previously unthinkable events. So much had been taken for granted in our everyday lives before the events of 9/11/01 and their aftermath changed us all forever. I remember thinking, that morning of 9/11, that thousands and thousands of people would suddenly be feeling the devastation we felt at Tracy's passing. It was a staggering thought. Then came the many stories of heroism, compassion, and love that gave some solace to our aching hearts. And I thought of all the children with terrible illnesses and disabling medical conditions who you have helped through this fund. I want you to know that you are heroes to these children and their families. And I'd like to tell you about the children you helped this year.

Jennifer is 13 and is partially paralyzed due to Spina Bifida. We obtained a gait trainer for her so she would not be totally confined to a wheelchair.

Seven-year-old Morgan has brain tumors that cause her to have fine motor skill problems. Since she has great difficulty when completing writing tasks, we obtained a laptop computer for Morgan. Her mom wrote, It was so wonderful to see her so happy and proud to do school work!...Thank you for your generosity and willingness to enrich a little girl's life. At 2 1/2 months of age, Nicholas had already undergone two open-heart surgeries. At 5 1/2 months old, he had spent more days hospitalized than home. Finally, at home, he needed injections of a medication to protect him from respiratory infections. The insurance company, however, would not cover these injections once Nicholas was released from the hospital. We provided a month's medication so Nicholas could obtain it on an outpatient basis. His mom wrote, "We can't thank you enough for your help...It is so good to have him home."

Twelve-year-old Kelly has cerebral palsy. It's been a challenge for her family to enable Kelly to share in outdoor weekend activities. It's a quality of life issue that often goes with medical issues. As you can see from the photo, she is really enjoying her new rehab stroller.

This summer has been a scorcher and terribly humid too. For children who are medically compromised, the heat takes a terrible toll. I remember Tracy's extreme discomfort during the hot and muggy days and nights. It drained her of any energy she had. This summer, your generosity has purchased four air conditioners -- one for an 8-year-old girl hospitalized twice in one week for respiratory arrest due to severe asthma; one for an 8-year-old girl who had surgery and radiation for a pituitary tumor; one for an 11-year-old boy who is wheelchair-bound with cerebral palsy; and one for a 6-year-old boy with cystic fibrosis.

Friends, although I've heard it a number of times, I am always surprised and upset to hear that Medicaid will not replace necessary items that break before their allotted time. An 11-year-old girl who is being treated for a brain tumor had a broken walker and she would have been out of luck. Thanks to you, she now has a new walker. A 13-year-old boy with cerebral palsy had a very old and heavy wheelchair, but it was not time for Medicaid to replace it. His mom was having a hard time transporting him around town. You enabled us to purchase a specialized stroller for him. A push-chair was also purchased for an 8-year-old girl with Sickle Cell disease. Bathing disabled children is a difficult task for parents who do not have specialized equipment. You have provided a special bath system that can be inflated to fit around two young sisters who have cerebral palsy and are ventilator-dependent. An 11-year-old girl with Ewing's Sarcoma also received a shower chair. A bath chair and head support were purchased for a 13-year-old boy with cerebral palsy.

For a 3-year-old boy with Wiskott-Aldrich syndrome, a rare immunodeficiency disease, the purchase of a blood pressure cuff enabled him to go home after a 9-month stay in the hospital due to numerous complications. A 5-year-old girl with a chronic kidney disorder was also outfitted with a BP cuff.

We received such a lovely letter from an 18-year-old girl with juvenile rheumatoid arthritis: AI wish to express my sincere appreciation and thanks for your most generous gift of the wrist brace...Through physical therapy and this brace, I now have a much greater range of motion...Recently I was able to resume my position as catcher in my favorite sport, softball. Without your generosity, none of this would have been possible as I was unable to afford the brace and my insurance would not cover it. You also contributed to the purchase of a leg brace for a 10-year-old boy with leukemia who, as a complication of a bone marrow transplant, has a condition that makes it difficult and painful to walk. A little 4-year-old girl with juvenile rheumatoid arthritis received a wrist splint so she could perform everyday activities. Another 4-year-old received an ankle brace to help him walk because he is paralyzed on one side. A 2 1/2 year old boy received a Dennis Brown Bar to correct...deformities of the feet.

This year, as in the past, Hagar Dilators were supplied to a 4 1/2-month-old patient with a malformation of the anus. You also enabled a 4-year-old girl to get a Jobst burn garment for her arm after she was burned in an auto accident. A 10-year-old boy with pulmonary hypertension and a heart defect received a stairlift because he cannot manage a flight of stairs on his own and it is increasingly difficult for his parents to continue carrying him up and down.

Friends, your donations bought a portable feeding pump for a profoundly retarded little boy who requires total care to maintain his health. Now, he is able to have the small, frequent feedings that are easier on his digestive system -- even when he is away from home. You also funded a month of G-tube feedings and supplementary high-calorie liquids for a 15-year-old girl with cancer of the larynx.

A little 8-year-old boy with Epidermal Lysisbullosa lives like a burn victim due to this disease that has no cure. We were able to supply him with some special lined pants and soft moccasin-type shoes to make him more comfortable. An 8-year-old with Epidermal Nevus (a skin condition which caused this little girl to not leave her house because she was so self-conscious about her appearance) received a month+ worth of medication as negotiations are ongoing with the producer to secure the prescription for the rest of the year. A 9-year-old renal transplant patient received medications for one month until Medicaid could kick in.

You have enabled us to contribute to some other very important items. You helped purchase a wheelchair lift and locking system for the van of a 14-year-old boy with a brain tumor. You have helped us contribute toward a bone marrow search for a 9-year-old boy with leukemia. You have also helped a 12-year-old boy obtain a prosthetic leg.

Finally, your donations helped defray the costs of some home renovations necessary for the health needs of three children. A sunroom was converted into a baby's room because the nursery became too small for the needs of a 6-month old who is ventilator-dependent and requires 24-hour nursing due to spinal muscular atrophy. A bathroom was made handicapped-accessible for a 15-year-old boy who is blind and has neuromuscular impairments. Lastly, a bathroom and bedroom were renovated for a fragile 7-year-old boy with Spina Bifida and a history of many, many surgeries for related difficulties.

I describe these children and their conditions so you can see just how much your donations mean to them and their families. Living with an ill or disabled child is often an isolating experience. Many friends and extended family members just don't understand or can't cope with the situation, and they often drop out of one's life. That leaves the immediate family with little support. Often, at least one parent gives up outside employment to care for the child, which can seriously impact a family's finances. Sometimes there is only one parent. Medical insurance only goes so far; it never covers everything needed. It's heartbreaking enough to have a child with serious medical problems; not being able to provide all that the child needs is especially difficult for a parent. That's where your caring and generosity come in. Did I say before that you are heroes? Yes, you are. Every donation means so much. So, I thank you for each of these children and their families. And I thank you for my family -- for continuing to support this fund and continuing to honor Tracy by doing so.

I just want to mention that we received a donation to Tracy's fund from Great Neck Community School, where Tracy spent some wonderful time with very caring teachers and administrators. During the past two years, students, parents, and staff filled a large bottle in the school lobby with pennies For a Cause. We are touched that Director Barbara Breslow and Lisa Cole, Administrator, continue to think of Tracy and our fund.

By the way, I hope you noticed the new photos of Tracy on this newsletter and on the brochure. It's my way of sharing more of Tracy with you.

Friends, it's often difficult for me to publicly express many of my thoughts, feelings, and experiences. I tend to be low-keyed and am uncomfortable with wearing my heart on my sleeve. But when the New York Times printed the stories of those who perished in TWC, I felt I wanted to do something similar for Tracy. So, when the Children's Brain Tumor Foundation invited people to submit stories for the Faces of Brain Tumors 2002: A Book of Remembrance and Hope (to help legislators understand the effects of brain tumors) this past Spring, I did write something for them. I am ending this newsletter with a copy of the piece I wrote:

My darling Tracy-pie. That's what I called my precious little girl, who passed on January 16, 1999 -- after having battled brain and spinal cord tumors for more than five years. It had taken me eight years to become pregnant with Tracy. I had told my husband, Sam, that I would try until I turned 40. I discovered I was pregnant on the very eve of my fortieth birthday. Sam and my older daughter, my Emily Lauren, had arranged a wonderful birthday party for me, and I felt truly blessed that night. But we were to have only eight years together with Tracy.

But, what a time we had together! What a beautiful, loving soul lived with us during those years! I've always thought of Tracy as a little sprite -- a light-hearted, happy spirit with open arms always ready for an embrace; a chatty little one, with a smile as wide as her heart. We had fun! We would visit the Bronx Zoo and enjoy all the animals in the spring; run along the beach and fill up buckets with sand during the summer; go apple-picking every autumn; and snuggle up on the big green couch in our den and watch Disney movies in the winter. Tracy loved singing and dancing, and we would often act out parts of the musicals we saw together. Did Tracy love dressing up? Oh, yes! She had a drawerful of costumes, but her favorite was a gift from a friend -- a very fluffy and tiered pink princess gown. Together with one of her sparkly tiaras and magic wands, she would be Glenda, Oz's good witch, on Halloween or Queen Esther on Purim, or Princess Tracy any day of the week when friends would come over to play. She was a little girl, and she loved to play. She loved to run and climb and swing on swings and ride her tricycle. And my heart was so full of love for her and gratitude for my wish come true.

Very shortly after Tracy's third birthday, she started to become lethargic and clingy. She didn't want to go to nursery school. We thought she had a virus that was going around town. The pediatrician didn't find any signs of illness. A neighbor, who happened to be a child psychiatrist, suggested we take Tracy to a neurologist. After a day of testing, we wound up in the emergency room of Schneider Children's Hospital, making plans for the craniotomy Tracy would undergo the next day -- Thanksgiving, 1993 -- to remove the brain tumor that was revealed on the MRI. Days later, testing of the tumor showed it to be an ependymoma, a rare tumor that very few survive. Coming home and taking a moment for myself alone, when Sam was with Tracy, I remember thinking, All my life, I was such a worrier, and none of the things I worried about happened. This was something that never entered my mind, yet it's happened. I decided then and there that with such an uncertain future, I would live for each precious moment. During the next five years and two months, Tracy went through seven surgeries, five separate rounds of radiation, and one-and-a-half years of various chemotherapies. For the first several years, Tracy was amazingly resilient. She had periods in which she'd bounce back to her own seemingly healthy self. Each time, we'd be sure that she would beat the odds. Of course, she was never quite the same after each bout, but between my husband, an educator of children with special needs, and myself, a social worker, we thought we could help Tracy compensate for any deficits; and then, there was her shining personality that endeared her to all she met. But, try as we might, we could not save our precious little girl.

Now, I manage The Tracy Fleisher Memorial Fund to keep Tracy's light shining and to help children with critical medical needs by funding medically-related equipment, treatments, and therapies that aren't covered by medical insurance. I like to think that somewhere, somehow, Tracy knows this -- and she's smiling.

The Tracy Alison Fleisher Memorial Fund